The Witch, The Python, The Siren and The Bunny

Are you a witch? We will tie your hands and feet then throw you in the water to see if you sink! If you do you were innocent, too bad. If you don't you are a witch, and we have ways to deal with witches. This was a very funny Monty Python skit. Its funny in part because it uses common reasoning - and common fallacies.

"If you have a disability you are faking it" is the implied claim by the current UK government and ATOS. We will cut you off from assistance, and not care if you die. If you don't die you were faking. If you do die, too bad - we need to cut costs and death is a great way to cut costs. Sure the system can be improved. We will get around to it ... eventually. In the meantime lets tweak a few features ... there, we made it better, how can you still be complaining?

Spending a Gold Doubloon to Save a Penny

This is effectively how those with ME and CFS are being treated in the UK, but not just those with neuroimmune diseases or MUSes - most disabled have to face this now. Its a new Inquisition in the worst Monty Python style. If you are disabled then you can work, you just have to be forced to do it. It doesn't matter that you may be dying - dying people have also been assessed as work capable. It doesn't matter if you can't even properly look after yourself or your domicile. It doesn't matter if travel is hugely problematic. It doesn't matter that there are not enough jobs for healthy people. It doesn't matter that most employers are reluctant to hire the disabled and that reluctance will grow to outright hostility if highly disabled people are being forced on them. It doesn't matter that large numbers of people win their appeals to restore benefits - you can cut them off again after only a month, and it can take many months for an appeal. It doesn't matter that all this may cost many times what it saves - they can spin it to sound good. It also doesn't matter that the suicide rate is heading into the stratosphere - thats not genocide, its business as usual.

This is about spending a gold doubloon to save a penny. Its irrational. Its immoral. Its an economic disaster unfolding. Careful rational spending would achieve better outcomes, and it might actually be cheaper to spend more rather than less to get more people off disability incomes.

It can be stopped.

I wonder if I should write a blog comparing the current British Government to the current Syrian Government? How many have died as a result of this? How many are homeless? How many live in torment, fear and profound mistrust of the establishment? This is not business as usual. This is not good government. This is the insane version of economic rationalism - its economic dogma.

The Siren Call.

Something similar is happening with the Dysfunctional Belief Model for CFS.

Sykes has pointed out that the diagnosis of CFS as a mental disorder makes use of what he calls the psychogenic inference. The psychogenic inference uses the following "logic":

"Premise 1. If there is no known physical cause for a
condition, there is no actual physical cause for the
condition.

Premise 2. If there is no actual physical cause for the
condition, the cause must be psychological.

Conclusion (The psychogenic inference). If there is no
known physical cause for the condition, the cause must
be psychological."
(p. 312 Functional,Reasons, Neuroscience and the Psychogenic Inference )

Sykes' paper Medically Unexplained Symptoms and the Siren Psychogenic Inference targets the first of these premises. Its not a defensible position. Its also possible, from a strictly logical standpoint, that there is a physical cause that has not been discovered yet. Or that there is a physical cause that has been wrongly dismissed. Or that there are both physical causes and mental causes - so why do they then proceed to ignore the physical?

The psychogenic inference relies either on unexplained symptoms or the lack of a known disorder causing the symptoms. The problem is that most CFS symptoms have physical explanations - you just have to do testing that goes beyond what the hospital system typically provides. So a very real alternative to mental causation is a simple lack of diagnostic and investigatory tests. This is defended on two grounds:

1. It costs too much and often comes up empty, so it is a waste of money.
2. Even if physical problems are found they do not know how to treat it anyway - again a waste of money.

The third through fifth unspoken points are:

3. Its not their problem that the lack of such testing means that patients cannot receive appropriate social support including financial support.
4. Its not their mandate to fund tests to support social claims - OK, maybe it is, but there isn't any funding, what can they do?
5. Its not their fault that they can't treat many of these problems - that requires cutting edge medicine, is often not well validated, requires a better understanding of systems biology which is not taught at medical school, and is often seriously expensive ... where is the money coming from? Who is going to fund this expensive research?

What Sykes does not discuss is the possibility the majority of current psychosomatic medical thinking is wrong. This is a whole other debate, one I will return to later. Sure there are mental issues that cause physical symptoms ... oh, wait, depression is closely associated with physical problems, as is anxiety. It couldn't be that those physical issues are driving the symptoms? No, surely not! Thats buying into the biomedical model, heresy! Sorry to point it out, but the biopsychosocial model does have a bio- part ... oh, and a social part too.

This is not to refute the importance of cognition, mood and behaviour on modifying brain induced symptoms. The brain is plastic, it can change. The physical issues in the brain might therefore be modifiable by various techniques including CBT - but that doesn't necessarily mean the problem is mental. It might be - or not.

So the basis of a psychiatric diagnosis is this: A patient has a psychiatric reason for their CFS unless a known physical cause is found - in which case even a diagnosis of CFS cannot be made as its diagnosed by exclusion. Therefore by definition, not evidence and reason, if they have CFS then they have a psychiatric illness. Case closed.

Or put another way: If you can't prove your not crazy then you must be crazy. They do not have to prove they are right, only that you can't disprove them - but no you can't do any tests. Its a presumption of craziness without evidence. Oh wait, yes, they use a symptom checklist. Presumed psychosomatic patients have these symptoms. If you have these symptoms you must therefore have a psychosomatic illness. Its only invalid if a known alternative illness explains the symptoms, like MS. If you have a physical illness with these symptoms that is not understood ... gosh, no, that could never happen! Sorry to point this out, but how many former psychosomatic illnesses are now known to be physical?

The Happy Happy Easter Bunny.

McLaren had this to say about psychoanalysis in his discussion of Popper:

"In 1922, at the remarkable age of twenty, Popper realized that, intellectually speaking, psychoanalysis was on a par with the Easter Bunny: there was nothing anybody could say or do that would force a committed analyst to admit his theories were wrong." (p. 9)

The DBM is a cognitive and behavioural version of the emotive ideas of Freud. It is an unproven model, and the model is not reality. If you always have an explanation, then nobody can prove to you that the diagnosis is wrong.

McLaren has an alternative model of mental disease based on what he calls a biocognitive model. Its just one of the alternatives out there. Functional medicine is also another model ... and by functional they do not mean psychological, but pertaining to the functional relationships between biochemical pathways and physiology, and based on systems biology. Rituximab, a chemotherapy agent, might be shown to be a cure in phase 3 clinical trials. Antiviral and immunological treatments get results up to an order of magntitude better than DBM treatments - so large that I will argue that an RCT is not required to demonstrate effectiveness. Yet somehow the DBM is considered THE alternative. I will get around to addressing the so called "evidence base" for the DBM in a later blog, including methodological flaws. I also intend to discuss the BPS model, and hope to show that it is likely the DBM has been eclectically crammed into the BPS model - but I am still investigating this and will it be well into next year at least before I have much to say on this.

So the DBM is an unproven, counter-factual and irrational position. Yet it is presented as the only evidence based model, with an implication that therefore it must be correct. I would prefer to believe in the Easter Bunny, I see evidence of the bunny every April.

It would be far more rational for the proponents of the DBM to claim that they have an hypothetical and controversial model with little clinical value, that its still experimental, the outcomes are poor, and that alternative models may have validity. No, what? How could they do that? Hmmm, ethics ...

About the Author

I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I became political around 2009. My current project is a book called "Embracing Uncertainty". Uncertainty in medical science seems anathema to too many doctors. "I do not know" is something more doctors should be honest about.

still too whacked out by that damn norovirus to properly particpate in this great thread, sigh
but:

Eternal vigilance is the price of freedom. Its also the price of rationality
yup!
Science offers no certainty, only eternal doubt, eternal need to wake up each day and with each new item of data, to check, check and recheck

as I've said so so often elsewhere, we Humans know this much:
.
one tiny speck in a VAST universe, to think otherwise is monstrous and patently false hubris.

"ME = fakers!" so they could throw it in the rubbish bin and save their time on "More useful things"....
Typical, short sighted, stupid bullcrap

In the UK between a third and a half who were denied benefits win their appeal (depending on sources), though only maybe 40% actually appeal. A month later (the minimum waiting time) a percentage of these have their benefits denied again, so the appeal process restarts. There is a huge cost associated with these appeals. Part of the cost is an additional 145 new Judges needed to handle it - and the system is still in crisis with appeals backing up and more people being denied benefits all the time. It is hard to sort out what is happening though - its not being reported that well and there are conflicting claims.

On infrastructure to handle disability and other issues, I agree with the startup issues. Many worthwhile projects never get started because, despite long term benefits, the initial startup costs make it unappealing in any short term planning. The other issues is that this needs to be investigated thoroughly to find (potentially) the most effective approach - and such planning would take years and cost a bundle. Even then there is a good chance it will have to be modified drastically to make it work in the real world, leading to even more delays and costs.

The cheapest way to do this, bypassing the planning/infrastructure hurdle, is possibly to start up small pilot projects on different models. The most successful would then be used as models for more, and the program extended out over time and additional locations. There is nothing better to stimulate such programs as successful models already working to improve communities and save money at the same time.

A model like that recently tried in Australia for homeless men is claimed to have great outcomes and save money - the two are not necessarily mutually exclusive. They calculated the savings by determining all costs associated with homelessness, including increased law enforcement, medical usage and so on.

We lose so much that people take for granted. Being able to work is part of regaining that loss - this is quite separate from the financial benefits.

I think that, generally, the disabled can do so much more. I am not convinced this would cost more - yes there are costs. Those costs will result in higher productivity. That productivity will lead to benefits or savings elsewhere. Its the net cost or profit that determines its viability from a completely economic perspective. From a social capital perspective there might be very substantive intangible benefits from it that don't have a direct monetary value. Social cohesion, social optimism and other factors might well be improved enough that even if there is a small net loss it still might be very worth it.

I think we fully agree on that. What I meant was that building the initial infrastructure required, is much more expensive than the current system.

I think the biggest problem, both in medical diagnosis/ treatment and in disability issues is the lack of individual approach and trying to fit people into prefixed "boxes" that don't really exist.
The fact that we do not know or understand all the variables and complexities, don't mean that we should completely ignore them and stick everyone into some Procrustean bed. "one size fits all" doesn't apply here.

I don't know enough about the situation in the UK, specifically, to seriously comment.

I know there are also people who are evaluated properly and are even given their benefits based on their medical letters without a medical evaluation.

The question is what is the balance and also how many patients that were wrongly denied do receive their benefits after they appeal.

Hi DQ, let me start by commenting on your last point. These are indeed very complex issues. Almost any simple solution is likely to be too simple. Politicians like simple though, and cheap and simple is even better for them.

The issue I am trying to get to on death rates though, and lack data for, is how many disabled were dying before, compared to how many disabled are dying now. That data is lacking. We know how many are dying, but not why. The implication, and anecdotal reports, are the death rate has risen. I want to know by how much. Some of those committing suicide are doing it because the quality of life, the capacity to cope, is diminished - in those cases diminished beyond the capacity of the individual to cope. If this is a few here and a few there (which I strongly suspect is not the case) then its maybe not a huge issue. If on the other hand this involves large numbers of people then its a big problem.

The number affected severely is in the tens of thousands. More will be targeted over time. Many more are now afraid of their own government and institutions. Fear is the operative word.

I agree that the problem is in various ways worse in most parts of the world. I also consider that an issue requiring attention. The issue in the UK is that what they are claiming they are trying to do sounds reasonable, but what they are actually doing isn't. I have called it euthanasia by stealth on occasion. If society wants to go down that road it should at least be honest about it and open it up for debate. Doing it on the sly is not acceptable. The first step is to legalize euthanasia - anything less is hypocrisy.

One of the issues in the UK is that many of the disabled were receiving benefits specifically targeted at their capacity to work - that enabled them to use taxi travel to work instead of buses for example, or assisting with wheelchairs or other aids. That is one of the programs being severely downgraded. The onus is indeed on the disabled. Even dying people are being asked to work. People who are bleeding profusely have, it is claimed, been threatened with denial of benefits if they leave the premises during disability reassessment.

Most disabled people want to work. If a way can be found to do this then it would benefit them as well as society. We lose so much that people take for granted. Being able to work is part of regaining that loss - this is quite separate from the financial benefits.

I think that, generally, the disabled can do so much more. I am not convinced this would cost more - yes there are costs. Those costs will result in higher productivity. That productivity will lead to benefits or savings elsewhere. Its the net cost or profit that determines its viability from a completely economic perspective. From a social capital perspective there might be very substantive intangible benefits from it that don't have a direct monetary value. Social cohesion, social optimism and other factors might well be improved enough that even if there is a small net loss it still might be very worth it.

Take toxic chemicals and potentially poisonous drugs. We test them within controlled conditions in the lab, then limited conditions in clinical trials. But how will they interact with other disease conditions not controlled for, other pathogens, other drugs, other toxins? How about drugs and toxins that do not even exist yet? The potential combination is enormous, and grows exponentially larger if you allow for combination of three factors, four factors, etc. It can't be adequately tested for - its economically and practically impossible.

I fully agree with that. I think we are not being cautious enough in allowing the use of various chemicals, based on such limited studies.
You can argue that if there is a significant benefit (such as remission from a serious life-endangering illness) in taking that potential risk it is justified.
But, why should we allow synthetic chemicals to be used in that way in detergents such as washing liquids shampoos etc. Or why should we give potentially toxic medications to perfectly healthy people to treat numbers, (which are no more than surrogate markers for a possible disease) on their blood tests?

As to the situation in the UK.

From what I could understand about it, this is another example of how good intentions combined with a proper amount of human ignorance and stupidity can lead to hell.

The idea behind this reform, as I understand it, is very similar to what I think-
Instead of putting a label of "disability" and marginalizing people, making them feel like a burden on their families and the society, we should try and find the way to help them lead a productive life and earn their living.

Instead of giving them a disability allowance, we should give them an ability allowance which will help them make the most of their abilities and talents despite their disability.

The problem is that this approach is not less expensive, and requires much more innovative thinking and efforts if you want it to work.
It's not enough to tell someone-you can work a limited number of hours, under certain conditions. you also have to provide that person with the place in which he/she can work and with the proper accommodations.

Neither work places nor occupational physicians are equipped to deal with this. Further more, the evaluation required to truly know what someone can or can't do is much more elaborate and complex.

Most people (including physicians) find it hard to comprehend the fact that someone can be very ill and work at the same time. They either doubt their illness or their ability to work.

Most people don't think it is possible to work if your condition is not stable and there are times in which you can walk a short distance on your own, alternating with times in which you can't even move in bed.

If you want ill and disabled people to be contributing members of the society, you have to change those paradigms, you have to create the proper infrastructure that will give them the place to work, you have to provide them with the proper equipment, tools and aids. If they were physical laborers you may have to provide them with training so they could do something that doesn't require as much physical abilities.

There will always be some people who will not be able to do anything which requires physical or mental efforts. But, I believe those will be in the minority, if this is done properly.

What they did in the UK is put the burden of finding the work-place, creating the proper infrastructure etc. on the patients.
They also simplified the evaluation process so it can be done in masses, by people who were rapidly trained.

so, the end result is that instead of taking people, empowering them, giving them the ability and tools to do what they can, they created a very humiliating experience in which people have to defend themselves so that they will not be left in poverty.

Instead of blaming the multiple faults of the system, the patients are the ones who are blamed for this outrageous failure. But, what do you expect from politicians?

I also think it is wrong to assess everything by mortality. It's enough if people are driven to consider suicide (even if they don't actually do it), it's enough if people are severely disabled or have life-threatening symptoms even if they don't die. Given the choice I would personally prefer to live a shorter and healthier life than a very long life of severe suffering and disability. And I believe most people would. So, why do we see mortality as the worst possible outcome?

As to mortality: =the site above gives a mix of suicide due to unemployment (not related to illness) depression (which possibly may have been pushed over the edge by this humiliating process), and death from their illness (which again hard to prove was caused by this). I believe that if you look at the total number of deaths in the UK during this time period you will find that this was a very minor contribution to it. I believe more died from medical errors during their hospitalization or from unexpected side-effects or interactions of commonly used medications, not to speak of car accidents etc.

The situation in the USA, for instance, is much worse and has been so for years. People who are ill and can't work also lose their health insurance and many times can't afford even basic medical care.

http://nejm200.nejm.org/text_submission/a-physician-who-inspired-me/

I think those are truly complex issues and there are no obvious or easy solutions.

An update on the 32 per week dying, this is the estimated death rate for the disabled. Its says nothing about how big an increase there might be. I still do not have data on that. This site now lists 21 who appear to have died, with many more potential deaths:

Hi DQ, I get that, the "catch" was just a turn of speech. It was discussed in the same series of lectures as sickle cell anaemia, and I do understand the evolutionary significance. Not all deleterous polymorphisms provide advantages though, yet they still can survive and propagate. One of the reasons is they may be localized very close to other advantagious polymorphisms and not have enough downside to be quickly eradicated by selection pressure. So they piggy back on the survival advantage of other genes based on physical proximity on the chromosome. Selection does not act on specific genes, but on the organism in an environment.

As to leukemia from immortalized cells, well duh. Very much like I was concerned about Vioxx. It was an obvious risk. There should have been attempts to investigate, not dismiss, those concerns. The precautionary principle often takes second place to the profit principle (its not a motive I think, it goes beyond that to a Law in some people's minds).

One of the problems with the reductionist approach in biomedicine is as you say: we don't know what we are doing. Take toxic chemicals and potentially poisonous drugs. We test them within controlled conditions in the lab, then limited conditions in clinical trials. But how will they interact with other disease conditions not controlled for, other pathogens, other drugs, other toxins? How about drugs and toxins that do not even exist yet? The potential combination is enormous, and grows exponentially larger if you allow for combination of three factors, four factors, etc. It can't be adequately tested for - its economically and practically impossible. Which of course is why there is so much denial.

There is a claim that 32 people are dying per week in the UK potentially due to actions by the government and ATOS. I do not have reliable data confirming this. I think about 13, in total, have been investigated in depth. Abuse of the disabled might be pandemic in the UK but its hard to get reliable data. Worse, while I am on the side of the patients, I cannot say I am sure the data is correct just because its repeated and repeated. Its a bad situation, and if the UK govt. gets away with doing this then any country wanting to implement austerity measures can target the disabled with a systematic de facto euthanasia program. Society is going to have to make hard choices sooner or later, and pretending its not an issue is itself a bad choice.

It's not a catch, mutations that have no benefit would disappear, as those people would die at an early age and have no off springs.
Polymphorphisms and epigenetic modifications, are nature's way to adapt to changing environments.

some mutations which are seemingly disadvantegous (such as sickle cell) confer protection from a potentially lethal infection (malaria).

That is why we never know what we are really doing when we interfere with nature. What we think is good, can eventually lead to harm, and vice versa.

in the early 2000 I heard a very exiting presentation of gene therapy for a rare and potentially lethal congenital immune dysfunction. They were starting a phase I trial and everything seemed to be perfect. except one minor point-they were creating immortal stem cells in the bone marrow. I asked them if they are not concerned those children will develop leukemia. I wasn't smarter than them, just less involved in that project, so could see it from a different perspective. They gave me some unconvincing explanations why there is no such risk. A year later they had a few cases of leukemia in their patient's group and they stopped the study.

Also, modern medicine keeps less desirable polymorphisms in the population.
People with previously lethal congenital diseases can live for many years and even have their own children.

At the same time, modern medicine makes those polymorphisms less undesirable because the outcome is not lethal any more and those people can lead a very good life, as long as they are given proper treatment and support.

And this brings us back to square one...Disability issues, resources etc.

When I was studying polymorphisms and detox at uni, they gave an example of a factory. I forget the toxin used there. Some people got sick but not others. What they found is that most people have a normal sensitivity and the most common polymorphisms. Some have predisposing polymorphisms. Some have increased resistance.

The catch was this. Those who were more vulnerable to this particular toxin had increased resistance to others. Thats normal in a population - not everyone has the same resistance to any one toxin, but it often confers increased resistance to something else.

I honestly do not know the true extent of this problem. I also don't really care. I am neither a judge nor a policeman. The fact that there are bank robberies don't mean that every one that walks into a bank is a suspect and should be checked to see if he is armed.

I also believe that at least some of those cases are the result of people being pushed to exaggerate their symptoms in order to receive the benefits they deserve. This is because the system is not flexible enough to assess or respond to the true needs of every person.

I can tell you from my own experience that one of the physicians who evaluated me for mobility, said out of desperation- -I really want to help you and give you what I think you deserve, but why did you have to tell us that you can walk and are not fully dependent on a wheelchair? They ended up giving me some benefits, but less than what they thought I deserve, because they couldn't tick the right boxes. They encouraged me to appeal, and say the "right" things, but I never did that nor plan to do so in the future. So, a system that is not flexible enough to give people what they clearly deserve unless they exaggerate their disability can't blame people for doing so.

I also think that it is very humiliating to stress and exaggerate your disabilities. So, people who do so really have no choice. I am fortunate that I have other sources of income so didn't have to deal with this dilemma.

On these points I note there is a claim that more and more new psychiatrists are going into biomedical approaches

This is very concerning to me. You see more and more of those psychiatrists making a diagnosis of "mood disorders", "behavioral problems" etc. based on a short interview in their office. Those are then treated with various pharmacological agents that no one really knows what they do to the brain.

I am very concerned with the exponentially growing use of antidepressants, anxiolytics and Ritalin. I think we are gradually creating a society of Zombies, who become addicted and dependent on various pharmacological agents from a very early age.

Another problem I see, and will be looking at, is that when a new paradigm is touted its too quickly embraced at both the research level and in clinical practice. This is a mistake. A lot of the bells and whistles involved in EBM and BPS belong in research. Only when it is well developed can it transition to clinical practice.

Some paradigms are incorporated too quickly and others are taking too long.
I think this is because there is a lot of salesmanship and not pure research involved.
Evidence based stuff can only be tested in the real world.
In fact we probably don't do that enough, because real world evaluation of EBM based guidelines is much harder to do, harder to fund and harder to publish.
It's sort of like swimming against the waves, going against what is seen as progress, and who wants to do that?

I think that one of the reasons that BPS based treatments, specifically, are so easily accepted is that very few are aware that those can also cause significant harm.
I believe that 99% of physicians think that "talking therapy" may not do much good but also can't cause any harm. Also, 99% think that physical exercise is always beneficial.

I have found only one review and very few papers that discuss potential harm of physical exercise in certain conditions. (Maybe there are a few more that I have missed, but doubt that it reaches a significant number).
On the other hand, I have found numerous papers, review and web-sites that discuss the benefits of physical exercise in health and disease. (As long as you do it in a responsible way, and don't push people to do too much too fast etc).
So, it is not surprising that the medial community is ready to easily accept CBT and GET, without thinking too much about it.
It is very hard to change such paradigms that prevail in the medical community and society at large.

It is true that for most healthy people and for many medical conditions exercise is indeed very beneficial. But, not for all. This goes back to the horses and zebras paradigm. Horses and some zebras do very well with exercise, but some zebras do not...

I personally think that any diagnostic or therapeutic intervention that can lead to benefit also has the potential to cause harm. Only totally inert substances have no risk, but they are also incapable of causing benefit.

A certain rare polymorphism can turn an effective treatment into a harmful one for a specific patient. Even if we don't (yet) have the way to detect this polymorphism we can clearly see the harm, unless we are totally blinded by our misconceptions.